Society

Brazil’s children of the night

sun Geni: always hiding from direct exposure to the sun. Photo: Gustavo Moreno/CB/O Povo da Lua

Geni Antônia Jardim was only 7 when she learned that she suffered from a disease with a very complicated name: xeroderma pigmentosum, or simply XP. Without the proper knowledge or resources to do something about it, she felt helpless as freckles multiplied across her face. Those freckles soon became wounds, which also spread.  And the wounds then became dozens of small tumors. The damage was more evident on her lips, where the skin is more delicate. The sun is Geni’s sworn enemy, as it is the enemy for many others in her village, Araras, in central Brazil. Around 600 out of its 800 residents have, like Geni, the XP disease.

Essentially, XP is a recessive genetic disorder in which the ability to repair any damage caused by ultraviolet light is deficient. In extreme cases, all exposure to the sun must be avoided. Those suffering from this condition are up to 1,000 times more susceptible to skin cancer than people without it. No city in the world has a concentration of XP higher than Araras. The village has virtually become a ghost town, as most of its population must live indoors.

For years, residents from Araras believed XP to be a contagious...

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